At a Florida psychiatric home of last resort, one woman works her “dream job”

For 42 years, Barbara Lee has brought moments of joy to patients with severe psychiatric disorders. At Florida's only all-psychiatric nursing home, Balanced Healthcare, Barbara Lee, has worked at the facility for 42 years. The facility is home to 261 patients with psychiatric diagnoses, including schizophrenia, bipolar disorder, major depression, and schizophrenia. Most are over 50 and rely on Medicaid, many of whom cannot live on their own due to their mental and physical disabilities. Despite these challenges, the facility has been receiving poor ratings and reviews and receives little funding to upgrade or maintain the building, which is more than 50 years old. Dan Frenden, facility administrator, acknowledges the challenges faced by the population and the need for more staff. He admits that the residents of this facility are unpredictable and often scare people out of fear.

Published : 4 weeks ago by Lane DeGregory in Health

ST. PETERSBURG — After a while, she says, you get used to the screams.

You learn which patient shrieks when it’s time for his insulin shot, which woman wails every time a worker wheels her to the shower.

“Some people,” Barbara Lee says, “just like to yell.”

It’s a cool, dreary morning. In the parking lot off 66th Street North, Lee grabs a banana from her car and pauses to pray for peace for her residents. Then she keys her way through the doors at Balanced Healthcare — Florida’s only all-psychiatric nursing home.

The hall smells like urine, bleach and unwashed hair.

By the front desk, patients are propped on walkers, slumped in wheelchairs, many wearing hospital gowns and diapers. These are her people, the ones she can’t bear to leave.

She has worked here for 42 years.

“Excuse me!” cries a man in a blue T-shirt. “Can I get that banana?”

“That’s my lunch,” Lee says sweetly. “But I’ll see if I can get you one.”

A gray-haired woman rams her wheelchair into Lee’s leg. “A Pepsi, I know,” says Lee. “In a can. I’ll get it.”

Lee, 63, walks quickly, on the toes of her sneakers, toward her office, past the smoking porch, just before the secured dementia wing. But every few steps someone pulls her arm.

“Hey, Miss Barbara Lee, are we still having a pizza party tonight?”

Her job, in this place of last resort, is to give people a few minutes of happiness.

All of the 261 residents have psychiatric diagnoses: schizophrenia, bipolar disorder, major depression. While many people with these conditions lead active, independent lives, patients here have extreme cases — and myriad mental and physical disabilities. They cannot live on their own.

Most are over 50 and rely on Medicaid. Many don’t have families or anyone willing to help. Over the holidays, only a dozen got visitors.

This nursing home is often their only option besides being hospitalized or homeless.

It’s the only facility in Florida that admits patients with severe psychiatric disorders that no one else will care for, says Kristen Knapp of the Florida Health Care Association, which represents most of the state’s 700 nursing centers.

Dan Frenden, the facility administrator, says, “We’re a necessary evil.”

People with psychiatric disorders have been filtering into nursing homes for decades, since states began closing mental hospitals and trying to integrate patients into the community.

Between 2005 and 2010, the number of psychiatric beds in the country decreased by 14% — “to levels not seen since 1850,” according to a report by the Treatment Advocacy Center.

But funding for outpatient treatment did not increase to make up the slack. And while some people benefited from being out of institutions, others needed them. With nowhere else to go, many patients transitioned into emergency rooms, jails and overtaxed nursing homes.

“We have a waiting list, at least a month,” Frenden says. “Longer for the locked dementia unit.”

Some patients have been here for decades. Few ever leave.

Frenden, who took over the for-profit nursing home last year, knows his facility gets poor ratings and reviews. “We’ll never be a five-star building with this population,” he says.

Because of the patients’ conditions, they are more prone to hurting themselves and need more staff. That leaves little funding to upgrade furniture or the building, which is more than 50 years old. Since residents need so much help, Frenden said, infractions show up more often than at a typical nursing home.

“It’s a tough crowd,” he says of the residents. “Our folks are unpredictable, they scare the daylights out of you. Nobody wants to come here. But people are so grateful we’re here.”

Last year, Balanced Healthcare got an overall rating of one star out of five from medicare.gov, and one star for health inspections. In one recent report, a resident on a puree diet was caught stealing his roommate’s food. In another, the facility’s staff were cited for failing to adequately explain to a paranoid patient how to use a weighted blanket.

“An unkept facility. It is FILTHY,” someone wrote on a Google review last year.

“A very nasty looking facility,” another reviewer said. “I have been in a few but this is the worst.”

“This place is not for the weak or faint of heart,” someone else posted.

Lee knows what people say. She’s seen the population shift. When she started working here, only some of the patients had psychiatric disorders. Now it’s mostly Medicaid patients with mental illnesses. But in more than four decades, she only left once, to work with disabled children.

The next day, she came back to the nursing home. “I was too worried about my people.”

As she strides the halls, she greets Eddie, who wears a padded helmet and loves talking like Donald Duck, and Jamie, who flicks imaginary light switches, whooping, “Pow! Pow!” She folds a sweater over Francis’ shaking shoulders. Pulls a sheet over a woman on a gurney who had stripped off her clothes.

“Are you OK?” she asks Maria, who’s scooting a wheelchair with one foot, cradling her prosthetic leg. “Do you need me to take you somewhere?”

Her earliest memory is the first time she heard screaming.

She was four years old, at her grandmother’s house in rural Georgia. From a darkened room at the end of a hall came the cry, “Come help me!”

Lee ran closer, saw her great-grandmother sprawled on the floor. “Baby, please!” the old woman wept. “Help!”

But her grandmother pulled her back, saying, “That’s no place for a child.”

She still remembers her helplessness.

“Ever since then,” she says, “I wanted to take care of old people.”

Lee never knew her dad. “The story I was told was he was stabbed – murdered – when my mom was pregnant with me,” she says.

She and her older brother lived with their mom and grandparents until her mom remarried and had another son. Then they all moved to Florida, where her mom had two more children.

Lee and her siblings each had two changes of clothes, one pair of shoes. Their mom worked two jobs and came home exhausted, then had to make dinner.

When Lee was 9, she cooked her first meal: collards, candied yams, cornbread and a roast. She’d studied her mom. From then on, she made the meals. “I never wanted to play outside or with other kids,” she says.

After high school, she was determined to work in a nursing home, though she had never been in one. She enrolled at St. Petersburg College to become a nurse. But a sign in the financial aid office offered an alternative: A nursing home was seeking housekeepers.

She started mopping floors here in 1982, when Reagan was president. She was 21, and the facility was called Jacaranda Manor. She had no training in nursing or working with psychiatric patients. She’d sweep the corridors, stock the bathrooms and set up the dining room for $3.35 per hour.

“When I told people where I worked, everyone would go, ‘Eeew!’” Lee says. “I didn’t see ‘Eeew.’ I just saw people who needed help.”

After two years, without being asked, she was promoted to activities director.

She learned how to call Bingo and paint ball caps. She figured out how to stop “exit seekers,” residents who try to leave, and to report a “falling star,” when a patient falls.

She isn’t scared of people banging their heads or hearing voices. She doesn’t worry about getting hurt, like that time a resident threw his walker or another patient bent Lee’s finger backwards.

An hour after Lee arrives, she finally makes it to her office: a tiny room where shelves are stacked with games and crafts, hats and stuffed animals.

She’s the gatekeeper of all of the residents’ pleasures and distractions.

One wall is flanked by a rolling cart filled with Pop-Tarts, Fig Newtons, cups of chocolate pudding. The other contains a padlocked metal cabinet covered with silver butterflies and a reminder: “Always be joyful!” Inside, cartons of cigarettes are labeled with patients’ names.

Lee doesn’t smoke. But she spends $3,000 a month on cigarettes for her residents, mostly using their Medicaid allowances.

“It’s so simple to make them happy,” she says.

She parcels out the day’s ration: 15 cigarettes for patients who still have funds, six for those who don’t. On her way to deliver them, people tug at her.

“Can I get a whole carton this time?” asks a man wearing a tasseled Fez.

About half of the residents can get around by themselves. Lee makes a monthly calendar with something to do each day: trivia contests, crochet lessons, board games in the dining room. She invited a couple from her church to lead sing-alongs.

For the patients who stay in their beds, Lee brings CD players, coloring books and word searches. She also added activities for the dementia wing.

She collects clothing for the residents from relatives and church friends. She hosts ice cream socials, movie nights and “Name that tune.” Every month, she buys a big cake to celebrate patients’ birthdays.

On the smoking patio, two employees are fitting flame-proof aprons over the patients. For those who can’t hold their own cigarettes, the aides use tongs to move the smokes in and out of the patients’ lips.

“What’s wrong?” Lee asks, turning to him. “Oh, I see. Your shoes are on the wrong feet. Let me switch them.”

What if it were you? Lee thinks about that a lot.

What if you couldn’t remember how to pull on pants or call your son? If you couldn’t go get a Coke whenever you wanted? If no one came to visit? If you knew you would never leave?

Wouldn’t you want someone to bring you a blanket, push your wheelchair, hold your hand?

Lee got married a few years after she started working at the nursing home. When her son and daughter were old enough, she brought them with her some summer days. She helped get her mom and sister jobs, as a housekeeper and as a nurse. Her niece works with her now, manning the snack cart.

All seven of Lee’s grandkids have learned to wait to open their Christmas gifts until after the patients’ party.

“I’ve never known an activities director who plans the residents’ celebration on the actual holiday,” says Frenden, Lee’s boss. “She wants to spend it here with them. She sees something in them that others don’t.”

Outside of work, she goes to Bible study, takes her grandson to Boy Scouts, fills the communion cups on Sundays. She seldom travels. For years, she has carried over a month of vacation.

“She’s like a big sister to everyone here,” says Rhonda Davis, who has been Lee’s assistant for five years. “When you’re having a bad day, patient or employee, she always prays for you and makes you feel better.”

Lee never complains, her boss says. Doesn’t seem to get flustered. “I’m just quiet and laid-back,” she says. “Really, I’m mediocre.”

After logging cigarette and snack purchases, after passing out the monthly calendar in each room, after bringing a Rod Stewart CD to a dying man, it’s past 4 p.m. Lee hasn’t stopped to sit or taken time to eat her banana. She should be heading home.

But she promised Betty someone would do her nails. And Mary Alice wants a ginger ale. And she has to order pizzas for the party tonight.

Then, over the hum of oxygen tanks and moaning, she hears someone shouting, “Miss Barbara Lee!” A man in a pineapple shirt is shuffling toward her, arms outstretched. “How about getting David out of my bed?”

He leads her to his room, where a bearded man is propped on a pillow. “David?” Lee says gently. “David, you’re in the wrong bed. Give me your hand.”

At the far end of the hall, she sees blood on the floor. Small specks at first, then longer streaks. She follows the trail until she finds Cleveland, who has been dragging his bare feet to maneuver his wheelchair.

“Where you going?” Lee asks. He mimics smoking. “They’ll save your cigarette. Let’s find a nurse and get your foot fixed up first.”

“Barbara Lee, Miss Barbara Lee,” calls a woman with a white ponytail. “I hear we’re going to have some goodies at the party tonight!”

“Did I say that?” Lee answers. “You can’t even eat pizza. You’re on soft food.”

The woman grins, showing her gums. “Well, I can try.”

By 6 p.m., more than 40 people are packed into the dining room. Even the smokers have come inside. Lee sorts pizza by dietary restrictions, pulls the crust off for folks with no teeth.

“Oh, you look so pretty,” she tells Mary Alice, who has long braids. “I need to get my hair done like that.”

“Barbara Lee, Miss Barbara Lee,” calls the ponytailed woman. “Can we have another piece?”

Lee is handing out seconds when Mary Alice goes to throw away her plate. As she leans over, she tumbles out of her wheelchair and lies, wailing, on the floor.

Most of the residents don’t seem to notice. Lee runs over, bends and cradles her. “What happened? Are you OK?” She’s not allowed to lift the sobbing patient, so she asks an aide to call “falling star.”

“Don’t try to get up,” Lee soothes. “We got a nurse coming to check you out.”

As they wait, the man in the Fez pulls out his harmonica, flooding the room with “Amazing Grace.”

At 8 p.m., 12 hours after she arrived, Lee finally locks her office. She has to go home and make sure her husband found something for supper and her grandkids did their homework.

She makes it as far as the nurses’ station before someone stops her: John David, who has been in the facility for 17 years.

“Alright, Barbara Lee. Miss Barbara Lee. Where are you going?” he asks, blocking her path.

“I’m going home,” she says.

He brightens, sits up straighter in his wheelchair. “Oh, take me with you, Miss Barbara Lee! I’ll be good. Can’t I come home with you? Please?”

She wishes she could.

When Lee’s own mom slipped into dementia, then was dying, Lee and her relatives kept her at home. Lee already told her kids she doesn’t want to go into a nursing facility — no matter what. She wants to end her days in her own home, surrounded by family.

She knows how much it matters: to be around people who care.

“You know I can’t do that,” she says softly. “This is your home.”

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